Fragile: handle with care

As much as I don’t like to admit it I am weak. I don’t mean mentally or emotionally I mean physically. My body is frightfully weak. Of all things, I am discovering that this is the one that is hardest for people to understand. My mom used to joke around saying, “well you’re young and able you do it!” But now that couldn’t be farther from the truth. My body is in full attack mode 24/7 and no longer has time to make sure muscles are sturdy, ligaments are well attached and tissues are protected. My body is focused on attacking my joints—offense only. Now, because of the disease the rest of my body is at a high risk. I have lost all the tone and strength that once carried my body effortlessly, and allowed me to youthfully spring back. When this disease struck I lost juvenile vitality and continue to lose it. Usually it’s “people of a certain age” who feel the way I do right now. I’m not that lucky. I get to experience the achiness of body every day for presumably the rest of my life. Oftentimes I feel more like my mom’s mother than her daughter in a body characterized as feeble. I am weak. I am frail. I am delicate. I am fragile. Please handle me with care.

It does not take much to send pain streaking through parts of my body. It takes almost no contact to register a massive blow, triggering the pain. When someone bumps into you in the hallway, you feel an instant of vague discomfort, say, “oops excuse me,” and then carry on your merry way. For me, this little bump could be the difference between a good day and a bad day. A little bump against a particular part of my body—namely the shoulders—will cause an ache that may last for hours instead of seconds. My body, though slow to move around, is lightning fast at recognizing pain.

The worst by far is still the wrists—the left one. Since my left hand is dominant it already is extremely overstressed. Writing, holding a phone to my ear, television remotes, using silverware, all of these are done with my left hand. My left hand is the one that I naturally throw up for a high five or fist bump. When I reach out to pick something up, or am getting ready for the day it is with the left hand I most often am using. I can’t just stop using it or I would get nothing done. But every time I do one of those things I am straining my left wrist. One time, when I went to tickle the stomach of my boyfriend he threw up his arm to block mine. A perfectly innocent and logically expected move on his part, he simply knocked my arm away from his body. Of course, he wasn’t expecting it to hurt me the way it did. It felt like a bomb had gone off in the middle of my wrist, like someone had smashed it with a sledge hammer and shattered the already little bones. In the few moments after contact I was sure my wrist had broken. I was in writhing agony as I cradled my arm against my body, wishing for the pain to egress. No, it was not broken. It was just the disease intensifying what should have been no more than a second of distress. I should be thankful that nothing broke, but I’m not. I would rather have it broken knowing it would heal, than to be left in painful limbo as I am now.

Foot massage anyone? Unless you have an inexplicable fear of letting people touch your feet, you would be crazy to pass the offer up. Unless, of course, you have a disease like mine. Too much pinpointed pressure quickly goes from a pleasurable experience to an unbearable one. This I think to be really unfair. I mean, really? Can I not even enjoy a simple indulgence like a foot massage? My feet can be so tender at times that even gentle pressure is extremely apparent (and not in the good way). My feet—the part of my body used constantly—should not be this vulnerable.

Would you like to know a physical fear I have? Falling down. I did this once while walking with my boyfriend on a trail through the woods. Slipped and fell. I flung down my hands to catch myself, and obviously this didn’t exactly have a positive affect on my wrists. Fortunately however, it was only my wrists affected. I am genuinely afraid of really falling down, like full body to the floor. At that point any joint would be completely defenseless. Wrists, shoulders, knees, or elbows: there’s no telling what kind of damage I could do by being a klutz. Every step counts, because every step I take soundly is keeping me from potentially weeks of hellish being.

It’s not easy to explain to people how easy it is to amplify my pain. A nudge here, a bump there—it doesn’t take much. My disease has made me susceptible to otherwise harmless contact, and people hurt me without the intent or the realization. I can’t expect all people to tiptoe around me everywhere I go. Besides, people forget almost immediately how fragile my body is. I’ve recently started a new method of explaining my frailty to people. I tell them to think of their grandmother (or if she is really young their great-grandmother). Think of what you would and wouldn’t do around or to her. For example, you probably wouldn’t jokingly pick her up and throw her onto the couch, or spin her around when you hug her goodbye. Then I tell them to think of me and treat me the same way they would their grandmother. In physical ability, I am not too far off. You don’t have to treat me special because of my disease in any other way—just remember how fragile I am and please, please be careful.